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Aplastic Anemia Toolkit

Aplastic anemia is challenging for both health care providers and patients to understand and explain. It can be overwhelming to be faced with the diagnosis of a rare disease like aplastic anemia, so it’s important to have clear descriptions of the disease information you need wherever you are in your aplastic anemia journey.

The resources in this toolkit will help you learn more about all aspects of aplastic anemia and manage your health care. There are printable patient information pages about disease basics, treatment options, managing side effects, and preparing for your medical appointments.

In addition, there are printable forms you can use to keep track of your treatment information and medical care – these include a symptom tracker, a medical appointment record, a blood transfusion record, and a chart for your health care team.

There are also short videos about aplastic anemia and links to many other AAMDSIF resources like webinars, booklets and fact sheets, a Map of Specialists and other informative content.

If you are a patient, you can select which of the aplastic anemia toolkit resources are most useful for you as well as for your caregivers and loved ones. You can also order a 3-ring binder that includes all of the patient information pages, disease management tools and AAMDSIF booklets and fact sheets related to aplastic anemia.

If you are a health care provider, you can print out the information sheets and share the other toolkit resources you think would be best for your aplastic anemia patients based on their diagnosis and where they are in their treatment journey. You can also order a “starter kit” in an expandable file folder that includes multiple copies of all patient information pages, disease management tools and AAMDSIF booklets and fact sheets related to aplastic anemia.

Downloadable pages about disease basics, Aplastic Anemia risk level, treatment options, side effect management and communicating with your health care team.

Aplastic Anemia Toolkit - What is Aplastic Anemia? (Thumbnail)

What is Aplastic Anemia?

Basic description of aplastic Anemia and how it affects your bone marrow and blood

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Aplastic Anemia Toolkit - Understanding Aplastic Anemia and Overlapping Diseases (Thumbnail)

Understand Aplastic Anemia and Overlapping Diseases

Learn more about the connection between aplastic anemia and other bone marrow failure diseases

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Aplastic Anemia Toolkit - Know the Types of Aplastic Anemia (Thumbnail)

Know the Types of Aplastic Anemia

Descriptions of the criteria to determine severity of aplastic anemia

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Aplastic Anemia Toolkit - Understanding the Symptoms of Aplastic Anemia (Thumbnail)

Understanding the Symptoms of Aplastic Anemia

Review of the range of aplastic anemia symptoms based on low blood counts

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Aplastic Anemia Toolkit - Treatment Options for Aplastic Anemia (Thumbnail)

Treatment Options for Aplastic Anemia

Summary of FDA-approved medicines for treating aplastic anemia and transplantation options

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Aplastic Anemia Toolkit - Managing Side Effects of Treatment (Thumbnail)

Managing Side Effects of Aplastic Anemia Therapy

Summary of the common side effects of aplastic anemia treatments and tips for managing them

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Aplastic Anemia Toolkit - Explore Clinical Trials (Thumbnail)

Explore Clinical Trials

Learn more about how to find a clinical trial

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Aplastic Anemia Toolkit - Preparing for Medical Visits (Thumbnail)

Preparing for Medical Visits

Guidelines and suggested questions for making the most of your health care appointments

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Forms you can use to keep track of your treatment information and medical care.

Aplastic Anemia Toolkit - Appointment Tracker (Thumbnail)

Appointment Tracker

Form to record health care visits and notes

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Aplastic Anemia Toolkit - Blood Transfusion Record (Thumbnail)

Blood Transfusion Record

Form to keep track of blood transfusions as part of aplastic anemia treatment

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Aplastic Anemia Toolkit - Healthcare Team Tracker (Thumbnail)

My Healthcare Team

Chart to record medical professionals, pharmacy contacts, patient support organizations and others involved with your health care

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Aplastic Anemia Toolkit - Platelet Transfusion Record (Thumbnail)

Platelet Transfusion Record

Form to keep track of platelet transfusions as part of aplastic anemia treatment

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Aplastic Anemia Toolkit - Symptom Tracker (Thumbnail)

Symptom Tracker

Form to record symptoms or reactions to treatment and medications that can be shared with health care providers

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This 3-ring binder includes all aplastic anemia toolkit patient information pages and disease management tools along with related AAMDSIF publications. Patients can add their own content, such as medical records, appointment notes, and helpful articles. Order the complete Aplastic Anemia Toolkit for Patients on our Request Educational Materials page »

This “starter kit” in an expandable file folder includes 10 copies of all patient information pages and disease management tools along with related AAMDSIF publications. Health care providers can share the Toolkit resources with patients as appropriate for their stage in their Aplastic Anemia journey. Order the complete Aplastic Anemia Toolkit for Health Care Providers on our Request Educational Materials page »

Aplastic Anemia Patient Guides and Fact Sheets
https://www.aamds.org/education/patient-guides-and-fact-sheets
Free educational booklets and fact sheets which can be downloaded or ordered for mail delivery

Aplastic Anemia Disease Information
https://www.aamds.org/diseases/aplastic-anemia
AAMDSIF website information includes aplastic anemia causes, symptoms,
diagnosis, types and treatments.

AAMDSIF Webinars on Aplastic Anemia
https://www.aamds.org/education/courses
Links to upcoming and on-demand webinars on aplastic anemia and related topics

AAMDSIF Podcasts on Aplastic Anemia
https://www.aamds.org/diseases/aplastic-anemia
Listen to interviews with leading aplastic anemia experts

AAMDSIF Hybrid Patient and Family Conferences
https://www.aamds.org/education/conferences/patients
Learn from leading experts around the world about aplastic anemia

Find a Specialist
https://www.aamds.org/patients/find-a-specialist
Interactive world map for finding aplastic anemia specialists

Aplastic Anemia Resources
https://www.aamds.org/patients/resources-to-help
Comprehensive list of resources for various types of support

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